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Thursday, October 18, 2012

And no, I don't mean "new blog post", as some do when they say "new blog". There's a whole new blog, with its own posts (or at least, future posts), in store for you.

I decided to break out my regular posts about Shoshana's Leukemia into its own blog, so that it would not be interrupted by the other things that normally occupy this blog, assuming a degree of normalcy returns, or some new definition of normal, in which her care does not consume such a majority of my time, energy, and thought.

I may occasionally still post on this blog about Shoshana and her care, and I may occasionally link from here to there, or there to here. My intent is not to draw a barrier between aspects of my life, but to make them more comprehensible and digestible to those who care to read about them.

I would also like Elizabeth (and perhaps some others) to contribute posts to the Shoshana: Leukemia blog.

Thursday, October 11, 2012

The last few weeks have been a roller-coaster. Shoshana was in the ICU when I last posted. She has stayed there most of the intervening time, and is there currently.

Shoshana and Daddy

This is due to her respiratory condition. One of the chemo drugs she was on--vincristine--caused vocal cord nerve damage, resulting in lots of throat pain and also vocal cord paralysis, to the point of preventing her from adequately breathing on her own--especially while asleep. This morning I learned that Shoshana is the 6th girl on record who has had this kind of reaction to vincristine, and vincristine is an old drug. Usually this kind of symptom clears up in a matter of weeks. With Shoshana, it might take months. I hope it's just months.

Mommy and Abigail with Shoshana

Abigail in the playroom on the cancer floor

Shoshana started her second phase of chemotherapy, 'consolidation', two weeks ago. Thus far, only observable side effect of the new drugs has been nausea in the past couple of days. Vincristine was scheduled for her as part of consolidation, but they will not administer it unless and until her current symptoms from it are resolved.

The doctors kept expecting Shoshana to recover quickly. She was doing pretty well, only on the BiPAP while sleeping at night or napping during the day--and not on the nasal cannula at all during her breaks. They transferred her from the ICU to the cancer floor at the beginning of this week, hopeful that she could be discharged on Thursday (today).

Shoshana and Grandma playing with Play-Doh

To determine if she was ready to be at home, they stressed her system by having her sleep without the BiPAP for as long as possible one night (she made it until 5:00 AM, and then proceeded to sleep on the BiPAP for 11 more hours), and then the next night, they did a sleep study where they monitored her in half a dozen different ways while she slept. She slept for three hours like that, at which point she was doing so poorly that they put her back on the BiPAP. At 7:00 AM she spiked a fever, and was transferred to the ICU, where again she slept until 4:00 PM. She was on the BiPAP pretty much constantly for the next day.

Wednesday morning, Elizabeth's mom Kristen called me and said she couldn't fill in for Elizabeth while she went to work for a few hours because she was sick (staying in the hospital with a kid on chemo with no immune system while you are sick is a no-no). I called in to work, and came up to be with Shoshana. When I arrived, Elizabeth told me that she, too, was feeling sick. A few hours later, she called and told me that she had a fever. She went to bed and basically slept all day, so I've been here at the hospital, and anticipate staying here until at least Sunday night.

Visitors

Shoshana seems to be doing pretty well, considering recent events. She is on the BiPAP only to sleep. However, the doctors seem to be coming to terms with the fact that Shoshana's vocal cord damage is not going to clear up any time soon. They would like to give her a tracheotomy, which would provide immediate and sustainable relief from her difficulty in breathing, and would not cause long-term damage. (They had before suggested the possibility of removing part of her vocal cords, which would have permanent effects on her voice.) They are confident that she will heal quickly, and that the risk of infection will be manageable, even while on chemotherapy. They would wait to perform the operation until her blood counts go back up (they are currently at a low due to where she is in this phase of her chemo).

Painting

She was slated to return to the cancer floor today, but there isn't room ready for her at the moment, so we will spend one more night in the ICU.

These past few weeks have also been rough on my family. Abigail has been sick with an ear infection this past week, and thus not able to visit her sister, or be visited by her mommy, daddy or grandma. Our dear friends Ian and Amanda have been taking care of her.

Elizabeth and I have had some pretty heated arguments, misunderstandings, distrust, and hurt feelings (as well as some burnout). We are on the mend, and it has resulted in some changes for the better, but needless to say it has been very difficult on both of us, and trust and hurt feelings will take time and consistency to rebuild.

Last Thursday was Elizabeth's birthday. We had been planning to go out
to eat, but Elizabeth suggested that we also go swing dancing. We did,
and we both had a good time. I definitely need to be getting more
exercise (Elizabeth, on the other hand, had better stamina than she was
expecting, thanks in part no doubt to joining a rec volleyball league).
I also threw together a surprise party with some of our friends on
Sunday, although in order to get her to actually leave the hospital, I
had to spoil the surprise. I tried and tried other angles, but she
didn't see any compelling reason to leave Shoshana's side.

Tickles

Please pray:

That Shoshana would recover quickly from the damage to her vocal cords. That she would respond well to treatment, and live a full life to the glory of God.

That each member of our family will be healthy and strong: Shoshana, Elizabeth, me, Kristen.

For me, that I would be given strength and endurance to do all that I need to do. It has been difficult to be away from work so much lately. I have become less dependable, and understandably have not been given many critical assignments as a result. It can be difficult to stay motivated when you feel like what you've been given to do is not very important.

That Elizabeth and I, that we would be able to love each other and communicate and work together in love without misunderstanding or falling into unhealthy patterns of thinking. That this difficult time would drive us closer together, and not be an occasion for destructive friction.

For Shoshana and Abigail, who miss each other and their parents very much.